Ben Pierce is going blind. The Texas 9-year-old boy is gradually losing his sight, but wants to create lasting memories in his mind’s eye as it were – of wonderful places and beautiful sights that he can hold onto when his sick eyes ultimately fail him. While most 9-year-old boys are learning to play video games or baseball, Ben Pierce is learning to become blind, shares USA Today on May 1.
Ben was born prematurely at just 23 weeks. His body weight when he was born was over four months underdeveloped. He weighed only a little over one pound – about the weight of a football. Doctors said it was unlikely he would live, and his parents prepared themselves to say goodbye to their infant boy, before they even had a chance to say hello.
“My hope was I'd just get to see him before he passed,” said Heidi Thaden-Pierce, Ben's mother, “I just wanted to be out of the general (anesthetic) long enough to see him and say ‘hello’ and ‘good-bye.’”
Ben’s mother received her wish, and nine years later, she still greets him every day, happy to see that her baby boy is still with them. But his problems at infancy took a toll on his eyesight. Ben's eyelids were still fused shut when he was born, and scar tissue slowly spreading behind his eyes will soon take his sight completely away from him. Until that happens, Ben is learning to use a walking stick, to read Braille, and has made a bucket list of sights to see.
“He had just crash after crash,” said dad Kit Pierce of Ben’s early struggles. “But he kept pulling through.” Kit said Ben needed eye surgery when he was born to save his retinas. “[The surgery] prevented his retinas from detaching, but it also left some scar tissue. And so every time he grows, as his eyes are growing, the scar tissue is not stretching. So he's losing a little more eyesight each time he has a growth spurt.”
Ben’s sight has become quite bad. His eyeglass prescription is already at the maximum, and he has developed sensitivity to overly bright lights. The world we live in grows dimmer to Ben, day by day. “Sometimes I see little dots appearing out of nowhere,” Ben said, as the scarring moves in.
“I just don't want to be blind,” Ben whispered through tears.
So doctors suggested the family give Ben as many visual memories as possible. But those things, those places, that Ben wants to go to all take money. Ben’s family is doing their best to give him what they can. “So let him see the mountains and let him see the oceans,” his mom said. “Take him to see animals so that he can describe it better when he doesn't have the ability to see it.”
The family has set up a website and blog that lists what’s on Ben’s "sight" list and chronicles the family’s story. Writes Heidi:
When we received the news that his eyesight had changed so dramatically we immediately began Ben’s wish list. What did he want to see, where did he want to go, what could we help him experience visually before he lost more sight… One of his therapists explained that as he gets older it will be easier for him to describe things and interact with the sighted world if he has memories of things – like snow, she said, or the ocean or a mountain. And of course beyond the practical logistics of it, we wanted to help Ben have the emotional experience of witnessing this wild and wonderful world!
"Some of his answers surprised us, and were really funny," his mom said, per wfaa.com out of Texas. "Like he wanted to go to the Apple Store. OK. Some of them were things that I'd never even heard of — these amazing forests in Asia, and he wants to see the Eiffel Tower."
Other things on Ben’s bucket list include a visit to England to see Van Gogh’s sunflower and the Tower Bridge, to gaze up on a California Redwood tree, to witness the Northern Lights, and to look across the Grand Canyon. The website lists some local things in Ben’s area that are do-able, as well as some things that the family likely will never be able to see. Happily, there are a number of places already crossed off, and Ben now has fond memories of beaches, NASA headquarters, theater plays and planetariums.
The Pierce family doesn't know how much time Ben has left before the sighted world that many of us take for granted goes dark forever for Ben. Perhaps years, perhaps only months.
"It does feel pretty urgent to us that we try to get him to as many of these places as quickly as we can," his mother said. "But when we look how far he's come and how many odds he's overcome and how amazing it is that he's even here, it gives us hope that maybe we'll pull off a few more miracles."
If you are in a position to help the Pierce family out with any of Ben’s wishes, please see their website. Says mom Heidi: “We’ve been receiving a LOT of messages asking if we have a donation page set up for Ben… Please know that we’re thrilled to have your kind words and well wishes and we’ve not intended to ask for any financial support – but it is really appreciated!”
The website lists a P.O. Box where donations can be made, and two other fundraising sites that are set up are: InspireMore.com and GiveForward.com. Even if you are not in a position to assist, please share this story via the links above or below.